Tool Does Not Help Care Decisions in Prolonged Life Support

Nicola M. Parry, DVM

January 29, 2019

Using a Web-based decision aid did not help surrogate decision makers and clinicians agree on treatment goals for patients receiving prolonged life support, a study published online January 28 in Annals of Internal Medicine shows.

"A personalized decision aid that is grounded in theory, targets surrogate decision makers of patients with prolonged mechanical ventilation, and feeds results back to ICU [intensive care unit] clinicians before a family meeting did not increase prognostic concordance; change decisions about goals of treatment; or improve outcomes of relevance to patients, family members, and clinicians," write Christopher E. Cox, MD, Duke University, Durham, North Carolina, and colleagues.

Because patients receiving prolonged mechanical ventilation typically lack the ability to make their own medical decisions, family members frequently need to act as surrogate decision makers in the care of these patients.

This decision-making process is complex and challenging for both surrogates and clinicians and is often associated with emotional distress and conflicting priorities.

Decision aids can help address problems in decision making by providing surrogates with relevant medical information, helping to set realistic prognostic expectations and aligning care choice with personal values. However, no clinical trials have investigated the use of such aids in acute care or ICU settings.

With this in mind, Cox and colleagues conducted a multicenter, parallel, randomized trial to determine whether use of a decision aid about mechanical ventilation improved clinician–surrogate agreement on the care plan for patients receiving prolonged mechanical ventilation.

They recruited 416 surrogates and 427 clinicians involved in the care of 277 patients who had been receiving mechanical ventilation for at least 10 days. The study compared use of a Web-based decision aid to usual care.

The decision aid provided personalized information about the clinical condition of each critically ill patient, including prognostic estimates and treatment options. It also interactively clarified patient values to help guide surrogates in deciding which ICU care goal best aligned with these values.

Surrogates privately completed the decision aid on day 1 of the study, and the results were then used for discussion in clinician-led family meetings held on day 2.

In comparison with usual care, use of the decision aid did not improve clinician–surrogate agreement about 1-year survival estimates (mean difference in physician clinician–surrogate concordance scale score, 1.7 percentage points; 95% confidence interval [CI], 8.3 – 4.8 percentage points; P = .60); surrogates' psychological distress symptoms (estimated mean change in total Hospital Anxiety and Depression Scale score from baseline, –3.2 vs –2.3; P = .31); patients' clinical outcomes, such as hospital mortality (47 deaths vs 39 deaths; P = .28); or the actual decisions made, such as duration of mechanical ventilation (15.3 days vs 13.7 days; P = .76).

However, surrogates who used the decision aid showed better understanding of clinicians' prognostic estimates (median difference, 57.2 vs 66.8 percentage points; P = .023) and less decisional conflict (mean difference in change from baseline, 0.4 points; P = .041) than surrogates in the usual-care group showed.

Various factors could have contributed to reducing the benefit of this decision aid for surrogates, the authors explain. These include the intense emotional and psychological challenges of making end-of-life decisions for loved ones; surrogates' overly optimistic prognostic expectations for the patients; and the difficulty of decision making for their loved ones in a complex clinical setting involving critical illness of sudden onset and rapid pace, having to communicate with many clinicians, the distress of nearness of death, and considerations of life-sustaining therapy.

"Future approaches to decision support in ICU settings will likely require greater individualized attention for both the cognitive and affective challenges of decision making," the authors conclude.

In an accompanying editorial, Aaron M. Tannenbaum, MD, and Scott D. Halpern, MD, PhD, both from the Perelman School of Medicine at the University of Pennsylvania, Philadelphia, stress that surrogates' overly optimistic expectations in these clinical situations may result more from their beliefs than from knowledge.

"Such formative beliefs may regard the patient's unique characteristics, the power of positivity, and the role of surrogates in making decisions," they say. They note that the ability to change these views may be key to aligning expectations and improving the quality of clinician–surrogate decision making.

Studies have shown that many seriously ill patients prefer function over longevity with severe impairment. Yet, despite these findings, surrogates frequently struggle to come to terms with their loved ones' values.

Thus, interventions that serve to improve surrogates' knowledge and stimulate deliberation may never improve decision making, the editorialists say. They emphasize the need for additional studies to help identify exactly what can enhance this process.

"Knowing may indeed be half the battle, but future work that goes beyond decision aids will be needed to truly improve preference-sensitive decision making," Tannenbaum and Halpern conclude.

The study was supported by the National Institutes of Health. One coauthor has received grants from Biomarck Pharmaceuticals outside the submitted work. The remaining authors and the editorialist have disclosed no relevant financial relationships.

Ann Intern Med. Published online January 28, 2019. Abstract, Editorial

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